Living with Hydrocephalus-obesity-hypogonadism syndrome
A rare condition seen from birth with extra fluid in the brain, weight gain, delayed puberty, and learning challenges.
Understanding Hydrocephalus-obesity-hypogonadism syndrome
It includes hydrocephalus present from birth (extra fluid in the brain), weight gain centered on the middle of the body, hypogonadism (sex glands that do not work fully), intellectual disability, and short height. Other features can include a short neck and breast enlargement in males. It is seen in newborns and infants.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Fluid buildup in the brain (hydrocephalus)
- Obesity
- Underactive sex glands (hypogonadism)
- Mild intellectual disability
- Short height
- Short neck
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include bone and joint specialists, genetic specialists, hormone specialists and urinary and male reproductive system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Resolve: The National Infertility Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Genetic specialists (geneticists); Hormone specialists (endocrinologists); Urinary and male reproductive system specialists (urologists)
- Expert care
- Expert lists: Resolve: The National Infertility Association
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Resolve: The National Infertility Association
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Changes in genes (also called variants) cause this condition. It is X-linked, meaning the gene is on the X chromosome.
Also known as: hydrocephalus with obesity and hypogonadism syndrome; sengers hamel otten syndrome; sengers-hamel-otten syndrome
Patient organizations
- Resolve: The National Infertility AssociationInfertility · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Hydrocephalus-obesity-hypogonadism syndrome.
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